|Joyce Burland, Director|
NAMI Family-to-Family Program
The story of Family-to-Family, NAMI’s educational program for families of people living with mental illness, is a story that has spread through the grassroots grapevine and is now the subject of several empirical studies, the most recent of which published preliminary findings in July. No other national peer-taught course has ever reached this stage of being recognized as an evidence-based practice. If we are now able to say that our twelve-week course lowers participants’ ratings of anxiety, distress and depression, it is because our volunteer work force has been so dedicated to maintaining the fidelity of a program that enables families to come out of the dark and deal much more directly with the realities that they have—a change in consciousness that would sound mystical if you didn’t know how much on-the-ground work it takes.
The journey from pain to empowerment
Caring for an ill family member can take a toll—according to NAMI’s Depression Survey, 50 percent of caregivers who responded had been diagnosed with depression themselves. I remember a mom and dad in one of my classes who brought their son living with schizophrenia to the class with them. He sat in the car with his dog while they attended Family-to-Family—a practice they utilized everywhere they went because he was too anxious to stay alone. They had not had any respite from being caregivers for over a dozen years. This couple did not know how to give voice to their son’s needs. By the end of the course they had become advocates for him. He was doing better on a new medication that they had determined from information in the class might work better; they had gotten him a case manager, and at their urging, his sister had become much more involved as a helper and friend. In Class 12 they announced they were going to take their first vacation away together in 13 years—a step which represented a real sea-change in their lives.
Given the isolation and silencing we experience as families caring for loved ones with mental illness, it is quite a journey from ignorance to empowerment. When families come to us, most are still immobilized by trauma and know absolutely nothing about mental illness or the existing resources for helping their family members. In the recent study, scores on constructive emotional focusing were higher after taking Family-to-Family, as was the rating of participants’ skills related to family functioning. Many participants tell us that this effect is exponential. We aren’t just teaching the people in the room—they, in turn, are reaching out to the rest of the family.
Part of the Family-to-Family model of recovery from trauma includes a last step in which you say, “Oh, now I understand the meaning and significance of what has happened to us—what I’ve learned through my troubles can help someone else.” Years ago when the program began, I was sure of this one thing: family members would make ideal teachers for other family members. The fact that Family-to-Family will soon celebrate its 20th anniversary is a testament to the staying power, the gumption and dedication of NAMI members. Some teachers have been with us for 25 or 30 classes. Approximately 40 percent of teachers themselves live with a mental illness in addition to being caregivers. They have made the name NAMI known in local communities all over the nation by sustaining a free resource for families that does not exist anywhere else.
In a perfect world, relieving caretaker burden and helping families and consumers revive the joys of their lives, in spite of mental illness, would be enough. But in an era of unprecedented service system failure affecting the people we love, much more is required. In NAMI’s vital and incomparable studies of Grading the States over a period of the past 5 years, the national grade for mental health services remains stuck at D. The families we teach need help they cannot find from community clinics and providers working overtime to manage funding cutbacks further shredding the safety net which now exists. This is where the “personal gets political”, for we cannot avoid coming clean with the families we teach that the services they require are services they often can’t get, and to secure them we must still fight for them. That’s the reason why NAMI members advocate: That’s why we’re always fighting in state legislatures not to cut funding. We know squeaky wheels get the grease and so we encourage people to squeak. I do not consider any class I teach to be an unqualified success unless at least 4 or 5 troublemakers come forward to serve as outspoken advocates in our movement for change.
In this regard, I am always reminded of the marvelous statement by the late, great Senator Paul Wellstone from Minnesota, who spoke of his own passage after his brother became ill with schizophrenia. He declared, “It shouldn’t be this way. I wish I’d gained my understanding of this subject solely through research and ethical inquiry. But for many people, the problems of mental illness are still utterly abstract, and their urgency becomes apparent only through intense involuntary immersion in them. We need an education initiative to pave the way for a legislative one.”
A community of understanding
So we can say that over the past 20 years, NAMI family member teachers have become experts on helping other family caregivers come through this involuntary immersion and regain their footing on NAMI’s solid ground. They have created a community of understanding where the same change in consciousness occurs over and over, year after year, in town after town. As I get in the car tomorrow night to go out and teach the Family-to-Family class in Santa Fe, I’ll be thinking that literally 3000 other NAMI members are getting in their car to go teach their classes too. In our case it’s in a schoolroom, where 22 people will be there waiting for us to help them discover a way to help their family members more knowledgably and effectively while attending to their own needs to live a joyful and purposeful life.